Integrating accompanying patients into clinical oncology teams: limiting and facilitating factors

Abstract

Objectives Since 2018, four establishments in Quebec have been instrumental in implementing the PAROLE-Onco program, which introduced accompanying patients (APs) into healthcare teams to improve cancer patients’ experience. APs are patient advisors who have acquired specific experiential knowledge related to living with cancer, using services, and interacting with healthcare professionals. They are therefore in a unique and reliable position to be able to provide emotional, informational, cognitive and navigational support to patients who are dealing with cancer. We aimed to explore APs’ perspectives regarding the limiting and facilitating factors in terms of how they are integrated into the clinical oncology teams. Methods A qualitative study based on semi-structured interviews and focus groups was conducted with 20 APs at the beginning of their intervention (T1) and, two years later, during a second data collection (T2). Limiting and facilitating factors of APs’ integration into clinical teams were analyzed in terms of governance, culture, resources and tools. Results The limited factors raised by APs to be integrated into clinical teams include the following: confusion about the specific roles played by APs, lifting the egos of certain professionals who feel they are already doing what APs typically do, lack of identification of patient needs, absence of APs in project governance organizational boundaries, and team members' availability. Various communication challenges were also raised, resulting in the program being inadequately promoted among patients. Also mentioned as limiting factors were the lack of time, space and compensation. Creating opportunities for team members to meet with APs, building trust and teaching team members how APs’ activities complement theirs were enhancing factors. Other facilitators include APs being involved in decision-making committees, being leaders in promoting the PAROLE-Onco program to patients and clinical team members and creating opportunities to communicate with team members to help enhance their work and provide feedback to improve patient services. Awareness of APs’ added value for the team and patients is also a key facilitator. Regarding tools, offering accompanying services by telephone allows both patients and APs to benefit from the flexibility they need. Conclusion Over time, APs were able to identify optimal factors for successful implementation. Recommendations include APs and professionals working in co-construction on organization, leadership, resources and status factors. This could help catalyze a change in culture within health establishments and allow people dealing with cancer to benefit from the experiential knowledge of other patients within their clinical team.

The black box of the relationship between breast cancer patients and accompanying patients: the accompanied patients’ point of view

“…Moreover, this study allows to delve deeper into the black box that is the relationship between accompanied patients and APs, as accompanied patients develop the benefits they derive in a more specific manner (communication with the healthcare team and loved ones; regaining control over their life; enhancing their quality of life), which APs can envisage but not always effectively evaluate [ 2 , 9 , 11 , 21 ].…”

“…The interview guide was established based on our previous research into APs’ perceptions of their contribution [ 2 , 9 , 11 ]. It covers the perceptions of the contribution of the APs’ support at the informational, educational, emotional, and navigational levels and of the process involved in accessing an AP (See Appendix 1 : interview guide).…”

“…Breast cancer presents a major challenge in terms of emotional support and communication between patients and healthcare professionals [ 10 , 11 ]. Although accompanying patients (APs) have demonstrated in previous studies their ability to improve communication with healthcare professionals and offer valuable emotional support through their personal experience with cancer, there is still a lack of in-depth research on the direct perception of patients regarding the contribution made by APs [ 2 , 9 , 11 ].…”

“…Breast cancer presents a major challenge in terms of emotional support and communication between patients and healthcare professionals [ 10 , 11 ]. Although accompanying patients (APs) have demonstrated in previous studies their ability to improve communication with healthcare professionals and offer valuable emotional support through their personal experience with cancer, there is still a lack of in-depth research on the direct perception of patients regarding the contribution made by APs [ 2 , 9 , 11 ]. Our study aims to fill this gap by evaluating not only patients’ perceptions of the contribution of APs but also by identifying the improvements needed to optimize the accessibility and effectiveness of this support in the breast cancer care pathway.…”